Going home after brain tumour surgery

Going home after surgery can feel quite overwhelming and you may find you have more questions than answers. Here you'll find some information to help you begin your recovery.

We understand that this can be a difficult time and you may want to talk about how you’re feeling after surgery.

Please remember that your healthcare team are there to help and are always happy for you to contact them for advice and support. Any question is fine to ask - so don’t be afraid to voice any worries or concerns you have.

The next steps

Holistic Needs Assessment (HNA)

A Holistic Needs Assessment (HNA) is a chance for you and your healthcare team to look at your needs and concerns about the support you might need following surgery. Together, you'll work out how best to meet these needs and develop a care plan.

You may have already had an assessment before your hospital stay, but you can ask for one at any time if you're worried about how you’ll cope when you're discharged. You should speak to your CNS (Clinical Nurse Specialist) or key worker about this.

The HNA assessment doesn't just look at how you're recovering physically, it takes into account your emotional, practical, financial and spiritual needs too.

After surgery, your CNS team should routinely offer appointments to update your assessment to better meet your needs. This is a good opportunity to talk about how you’re feeling and any symptoms you may be experiencing following surgery.

Post-surgery therapies

You may have seen an occupational therapist (OT), physiotherapist (physio) or speech and language therapist (SLT) during your admission to hospital. They are healthcare professionals concerned with helping you to be as independent as possible with everyday activities, such as:

walking

managing stairs

dressing

cooking

shopping

work.

As well as giving you advice, the therapists may arrange for you to have equipment, such as walking aids, to assist your recovery.

If you saw a therapist during your stay, they’ll have discussed with you any ongoing referrals or recommended treatment. If you didn’t see a therapist during your inpatient stay, you can discuss any concerns with your CNS (Clinical Nurse Specialist) or GP, who’ll be able to refer you to your local area teams.

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Long-term support

If you find you’re having some lasting symptoms or worries following surgery, contact your CNS team, who’ll be happy to discuss this in detail - either in clinic or over the phone.

Many patients find this consultation very useful, as it provides time for you to talk about the things that are impacting your overall recovery.

This can be a positive step forward in your recovery process and can take place at any point after your operation.

Waiting for your biopsy results

How long it takes to receive the biopsy results confirming your tumour type will vary between hospitals. Often, they won’t be available before you go home.

If you haven’t received them before you go home, the team will be in touch to arrange a time for you to go to the clinic and discuss your results. This appointment is usually arranged by your Clinical Nurse Specialist (CNS) or your consultant’s secretary.

If you're worried about having not received your results you should speak to your healthcare team about when you’re likely to get them.

Additional treatment following surgery

In some cases following surgery, it’ll be necessary to have additional treatment. This could be radiotherapy, chemotherapy or a combination of both. Your treatment options will be discussed with you.

If such treatment is recommended, you’ll be given an appointment with an oncologist once they have all the results about the tumour you’ve been diagnosed with.

Your GP

Your GP will receive a treatment summary when you're discharged from hospital. This gives details of your surgery, progress to date and any follow-up plans.

They'll also receive a medications summary that details any medications that have been started or changed during your hospital stay.

Clinical trials

Clinical trials are experiments into new ways of managing a condition. This might include investigating a new treatment, a new way of giving an existing treatment, or a new approach to diagnosing illness or assessing an outcome after treatment.

If this is something you might be interested in, ask a member of your healthcare team about current research and clinical trials. You can find more information on our clinical trials page.

Please be aware that many people can’t take part in a clinical trial. This can be for various reasons, such as lack of a suitable trial in your area or for your tumour, or your not meeting the strict eligibility requirements. Also the standard treatment may be most appropriate for you.

Common symptoms

No two people will feel exactly the same after surgery. Some people may recover very quickly, while others may take longer - this is completely normal.

Most people will experience some of the following symptoms but they should usually settle down over time:

Tenderness and numbness around the wound area.

These feelings should begin to get better each day.

A mild headache.

This should be relieved effectively with simple painkillers such as paracetamol and should improve a little each day. If not, contact your healthcare team or GP.

Swelling and bruising.

This may be seen around the eyes and face. This can look alarming, but isn’t a cause for concern. It will gradually fade in the days or weeks ahead.

Tiredness and fatigue.

Tiredness is very common following any brain surgery and regaining good energy levels can take some time. You can find more information about managing fatigue on our coping with fatigue page.

Noises or whooshing sensations inside your head.

During your recovery time, you may notice some unusual sensations in your head as things are settling down - these are often described as crackles, pops, whooshes or drips.

Additionally, if you’ve had surgery near your ear, you may experience a dull earache.

If you find that these symptoms continues in the months ahead, you should contact your Clinical Nurse Specialist (CNS) for further advice.

Symptoms to watch out for

Once you're home you should keep an eye out for signs that you may need medical attention.

If you experience any of the following symptoms listed, you should contact your healthcare team straight away.

If it’s leaking clear fluid or pus, you’ll need to ring the hospital immediately, so that your healthcare team can assess it more fully.

A soft fluid-like swelling behind or close to the scar.

This is brain fluid collecting under the skin. It’s called a pseudomeningocele. It will usually settle on its own, but ring your healthcare team for advice.

Frequently asked questions

When will the stitches (sutures) or clips be taken out?

Usually stitches or clubs will be removed seven to ten days after surgery. The ward staff will tell you the date your stitches or clips are due to be removed and who will be performing this.

Usually, this will usually be done by district nurses who visit you at your home. Or you can go to your local treatment centre, depending on the services available in your area.

If you’ve had previous surgery or radiotherapy, the stitches may be left in a little longer. This will be discussed with you before you go home.

If you have dissolvable stitches, these are usually inserted inside the scalp, so you’re unlikely to be aware of them. Occasionally they will be inserted into the scalp. They usually dissolve after 2-3 weeks. Try to avoid touching the suture line (line of stitches).

Do I need to keep taking my anti-seizure medication after my operation?

Yes – this is very important. Anti-seizure medication should only be stopped on the advice of your medical team.

Even if you haven’t had any further seizures.

Some patients need long-term, anti-seizure medication; others for just a few months following surgery.

Do I need to keep taking my steroids after I go home?

Yes. Don't stop taking steroids suddenly.

It’s important that you keep taking your prescribed dose of steroids (usually dexamethasone) when you leave hospital, as well as continuing to take stomach-protecting tablets.

You’ll be given specific instructions to either:

reduce the dose over a set time until you’re no longer taking any steroids, or

reduce to a specified dose of dexamethasone tablets until your clinic appointment.

The discharge team will explain all your medications, i.e. when, how often and how long to take them for. If you have any trouble taking them or experience severe side-effects, contact your healthcare team for advice.

While in hospital my blood sugar levels were checked every day. Will this continue?

Blood sugar levels don’t necessarily have to be checked every day. But, if you’re still taking dexamethasone at home, the ward staff will arrange for your local district nurses or practice nurse to monitor your blood sugars at home

How often they’re checked will depend on what your blood sugar levels were during your hospital stay.

When can I wash my hair after surgery?

You need to wait at least 48 hours, but 72 hours is better.

If there’s been any leakage from the wound, or you’ve had previous surgery, you may be advised to wait a little longer before washing your hair.

Use a gentle shampoo, such as baby shampoo, or the hair wash provided to you before coming into hospital. And be careful not to rub around the wound area.

It’s not a problem if some water runs onto the wound - you can gently pat the area dry with a clean towel.

If you have dissolvable stitches in your scalp (rather than inside your scalp), you can wash your hair as above, but don’t put shampoo over the suture line (line of stiches).

When can I dye my hair again?

You need to wait at least 6 weeks. This is to make sure your wound is fully healed.

However, if you’re going to be starting chemotherapy or radiotherapy, you’ll need to discuss this with your oncologist.

How long before I can fly?

It is strongly advised that you seek your doctor’s advice on whether they believe that you’re fit to fly, before booking any travel arrangements. You should also speak to your airline.

There are no specific guidelines regarding the minimum time before you can fly.

However, the Civil Aviation Authority (CAA), which is responsible for air travel safety, advise that you should avoid air travel for approximately seven to ten days following brain surgery.

The general advice from the NHS is to wait until around 6 weeks from your operation and you’ve made a full recovery from your treatment before flying.

Like most aspects of recovery, this will be different for everyone depending on their diagnosis, how their heath is following surgery and what their job is.

Most people need at least six to twelve weeks off work. However, this may be longer if you're having further treatment or if your job involves certain risks - for example, if you drive, work at heights or use heavy machinery.

You’ll be able to discuss this with your doctors and CNS to make plans that best suit your personal circumstances.

It may be useful to discuss returning to work with your employer before your surgery. We have a range of resources available to help you have that conversation.

If you're worried about returning to work because of financial issues it may help you to look at our financial support page.

Will I need to have further scans after my surgery?

Yes. Your healthcare team will let you know about any scans you need to have.

Initially, scans may be done more frequently, but over time the interval between scans may become longer. This will depend on the type of brain tumour you’ve been diagnosed with.

Alternative approaches to helping recovery

People often ask about alternative treatments to help in their recovery.

We understand that you may want to look at these options, but it’s important to keep in mind that they’re not fully supported by medical evidence and they may interfere with your standard treatment.

You should always speak to your healthcare team before pursuing alternative treatments.

Ketogenic diet

A ketogenic diet is one that encourages eating very low amounts of carbohydrates and increased amounts of fats. Although there is currently no scientific evidence to show that a ketogenic diet is effective in treating brain tumours, it is being trialed by some specialist centres.

Cannabis oil

The use of cannabis oil is highly publicised and there is some evidence that it can help treat some side-effects caused by brain tumours - for example, pain and chemotherapy-induced nausea and vomiting,

However, there’s no supporting evidence for the treatment of the tumour itself. It’s important to remember that cannabis-based products have not been licensed for people with brain tumours.